Using Intensive Interaction with those who present within 'a broad spectrum of demand avoidance'.

At a recent Intensive Interaction Forum meeting held here in Leeds, we discussed:

'Using Intensive Interaction with service users who present with some level of demand avoidance'.

Emerging from this discussion were some issues that I thought might be useful for others (health professionals, teachers, parents, carers, etc) to consider when working with, or caring for, people (i.e. adults and children) who present with some level of demand avoidance (i.e. not just at a diagnosed ‘pathological' level).

The sections below are taken from the minutes of our Forum meeting:

Pathological Demand Avoidance (PDA) is an increasingly diagnosed neuro-developmental condition, coming under the ASD heading. However we (the Intensive Interaction forum attendees) generally thought that we had worked with a range of service users who fitted somewhere along a 'broad spectrum of demand avoidance’ (rather than it just presenting at some diagnostically labelled ‘pathological' level). This spectrum of demand avoidance was described as differing widely in its form and severity, depending on the characteristics of the individual service users. 

We then addressed 3 aspects of working with people who present with some degree of demand avoidance: 
1. Why might demand avoidance occur for some service users?  
2. How might demand avoidance be presented? 
(and 3. How might Intensive Interaction help ameliorate the impact of demand avoidance for such service users? - but I will cover this in another, later Blog). 

So:

1.  Why might someone be (or become) demand avoidant?

• Anxiety, including social anxiety.

• Fear of the unknown, and a wish to avoid uncertainty.

• Fear of failure, getting something wrong, or disappointing others.

• Needing to control a situation, so therefore being unwilling to be controlled by another.

• Not fully understanding a demand, this then leading to anxiety about their ability to complete the demand.

• Previous negative experiences or trauma.

• Lack of positive interaction and /or socially supportive feedback.

• Low confidence or self-esteem and/or negative self-worth or self-view.

• Lack of social skills.

• Neuro-developmental issues (incl. an official P.D.A. diagnosis).

• Not being interested in the current activity being offered (i.e. not actually being demand avoidant).

2.    How might a service user’s demand avoidance be presented?

• Responding negatively to every day requests (not just ‘challenging’ things).

• Verbally declining (“no thanks”) or refusing (“NO!”) tasks that the person has the ability to do, or even actually likes doing.

• Ignoring or not responding to requests or the presentation of an activity.

• Changing the topic or closing down a conversation e.g. “it’s okay luv”, “Not just now”.

• Giving apologies before not doing something.

• Creating a distraction away from any given demand.

• Hiding offers of activities e.g. destroying letters, leaflets or invites etc.

• Responding negatively to positive comments or even to any praise given by others.

• Social withdrawal e.g. shutting eyes, avoiding eye contact.

• Physical isolation e.g. staying in bed, staying in a room, not going out.

• Physical withdrawal e.g. leaving the room, turning their back, etc.

• Physically pushing people away, out of their space.

• Failing to choose between some offered positive choices.

• Having a ‘Melt-down’ and/or causing environment damage.

So I suppose the question I should now ask others who weren't at our meeting is:

Do the above points ring true? ...are they accurate? ... are they sufficient? 

Is there more to add on these two aspects of working to support those with demand avoidance? (before we think about how Intensive Interaction might help such people?)

Please let me know your thoughts ...

p.s.This year's Intensive Interaction Weekend Workshop in October will be looking at these issues in more detail ... for further information on this professional development event, or if want an application form, please email me at: graham.firth@nhs.net

'Creating a clearing for live activity' by Ditte Rose Andersen

‘Creating a clearing for live activity: exploration, decisions and steps in implementing Intensive Interaction in Denmark’ – a chapter by Danish psychologist Ditte Rose Andersen from the book Delivering Intensive Interaction Across Settings (Barber & Firth, Eds, 2019) now available from Amazon - £4.43 in paperback or £0.99p Kindle version.

Below are some insightful and profound quotes selected from Ditte’s chapter covering her thoughts on different aspects of her Intensive Interaction dissemination work in Denmark:

‘Face to face-interaction, and its sense of live activity, is likely to be as important at a strategy meeting or a conference presentation as in the sandbox in an Intensive Interaction session’.

‘We come to understand both ourselves and others through our shared activities, not through abstract reasoning. The act of understanding another is bound up with the quality of our engagement with them’.

‘The [Intensive Interaction] approach is immediately socially inclusive and reciprocal in a way that lets you know the other person in a meaningful way. What you learn from participation is qualitatively different from the knowledge gained from distant observation, standardized testing, or clever experiments’.

‘In no way was I prepared for the profound and dramatic development it supports. It has been almost shocking to realize how attuned, responsive communication provides perfectly pitched conditions for the development of people’s potential’.

Ditte's chapter includes a narrative about her initial 'live activity' project when introducing Intensive Interaction into a Danish special school by directly working with an autistic boy called Mads.

‘At a face to face-level, I would describe the project period as one and a half years of living with, rather than overcoming, the challenge of different views and practices: living with that challenge in a way that allowed for time to practise’.

‘Although questions may be conceptual, theoretical and general, we need practice combined with reflection to be able to respond in meaningful, useful and precise ways’.

‘…if materials and symbols are used in ways that excessively controls the behaviour and activities of people with communication disabilities, they can be a hindrance to creating and nurturing developmentally relevant activities for children, students, service users’.

‘When faced with ideas, theories, values and concepts that we see as counterproductive to implementing Intensive Interaction, I think it is important to remember, that we don’t need to “...save the whole world or do anything grandiose” as the poem [‘Clearing’ by Martha Postlewaite, quoted at the start of Ditte’s chapter] reads. “Instead, create a clearing in the dense forest of your life and wait there patiently until the song that is yours alone to sing life falls into your own cupped hands…”’

After qualifying as an Intensive Interaction Coordinator in 2013, Ditte then went on to found Intensive Interaction Denmark in 2014. In 2015 she translated The Intensive Interaction Handbook into Danish, and in 2016 she received the Demetrious Haracopos grant, acknowledging her work in the spirit of Haracopos i.e. that ‘Every person has the right to be seen and heard’. 

For anyone even remotely interested in Intensive Interaction, I thoroughly recommend that you read Ditte's chapter in its entirety!

Did you know that research into the outcomes of Intensive Interaction started in 1991?

There are times when I feel that Intensive Interaction is still a fairly novel approach in educational or care services. However, the body of evidence for the range of positive outcomes for the approach actually goes back quite a way - in fact it goes back 28 years!

An Evaluation of Intensive Interactive Teaching with Pupils with Very Severe Learning Difficulties

Watson, J. & Knight, C. (1991) Child Language Teaching and Therapy, 7 (3), 310-25.

This 1991 article describes an evaluation of the use of Intensive Interaction by staff at a school for pupils with severe learning difficulties, in Edinburgh, over a one year period. Six pupils with severe learning difficulties were studied, these children being chosen to represent a range of age and ability. Six staff members worked with each given pupil over this period of time.

The Method: Staff were asked to behave as naturally as possible, and to introduce a toy or object that they felt would be interesting to the child at some point. The beginning of the session was signalled by taking off the pupils' shoes and leading them into the soft play area. Sessions were usually terminated when the staff member decided that the pupil had had enough (e.g. on the basis of decreased responsiveness). Each session was filmed, and staff also completed an interaction recording sheet. The staff were also interviewed at the end of the study.

The Findings: from this study it appeared that the interactions were important for the pupils, and staff emphasised the fact that ‘it builds a good relationship' and ‘there is confidence and trust ... built up'. Staff also talked about other positive effects, which included staff being more relaxed and more willing to wait for a pupil’s responses; and improvements in staffs’ observation skills.

In general, it was claimed that staff developed high levels of expertise, and that the interactive experiences ‘benefited their pupils and improved their own working practice’. Staff also claimed that the positive effects of the interactive experiences ‘also extended to other pupils in the class’ as the staff had become ‘more relaxed, more tolerant, and more willing to wait for responses’.

That research was published 28 years ago - and still we find ourselves introducing Intensive Interaction to staff teams who know little or nothing of the approach. More and more I find myself asking these questions:

Why isn't Intensive Interaction mandatory training for all staff who work in special education? and ...

What are we missing in getting Intensive Interaction truly embedded in the general fabric of our educational offer to all the children and staff (and parents) who would benefit?

Intensive Interaction Regional Support Groups - what are they, and who are they for?

The other week I was kindly invited to the first meeting of the Kirklees Intensive Interaction Regional Support Group (II RSG) .... thanks for that Aileen ... and I have recently noticed an increase in reports or posts asking about local II RSGs across the UK - which is great. It is now over 10 years since the idea of these Regional Support Groups took shape. Initially Cath Irvine (one of the founding directors of the Intensive Interaction Institute) wanted to help create locally accessible and supportive Intensive Interaction communities, and these came to be called Intensive Interaction Regional Support Groups.

So what are such Regional Support Groups for? Well, according to the section in the 'Intensive Interaction Handbook' (2nd Ed, Sage, 2018) their purpose is to:

• Support current Intensive Interaction practitioners e.g. by sharing and discussing case studies and/or video and collectively reflecting on good Intensive Interaction practice.
• Support and encourage novice practitioners e.g. parents, by providing a shared and supportive learning environment.
• Disseminate Intensive Interaction knowledge and information e.g. about conferences, practice guidelines, new books & DVDs, training opportunities, etc.
• Provide opportunities for peer support, problem solving and celebrations of success.
• Emphasise and further the multidisciplinary nature of Intensive Interaction work and provide a place for productive networking.
• Participate in relevant studies/questionnaires when requested by others researching the use of Intensive Interaction.

Central to the idea of creating accessible Intensive Interaction ‘Communities of Practice’, the UK Regional Support Groups were encouraged to provide a friendly and open forum for Intensive Interaction focused discussion and collaborative learning. Generally meeting every few months, each group is seen as semi-autonomous and democratic in nature; the groups run by the membership specifically for the benefit of the group’s members. 

Although there is often a basic agenda, the content and structure of each meeting should address the specific concerns of the people who attend. Sometimes RSG meetings are arranged around a particular theme or presentation, and in the past these have included:

• looking at the latest Intensive Interaction information or training resources e.g. the newest  Intensive Interaction DVDs and/or books.
• an ‘introductory’ presentation for parents e.g. setting out the basics of Intensive Interaction for parents who want to know more about the rationale or techniques used.
• video analysis for Intensive Interaction e.g. how to structure collective video analysis most productively.
• record-keeping and analysis to highlight progress in Intensive Interaction.

Responsibility for organising the RSG groups can be relatively fluid, although there is often a dedicated individual or small group of practitioners that act as a contact and organise the dates and venues (and refreshments!) for each meeting.

Thus our Intensive Interaction RSGs have now become part of the fabric of Intensive Interaction support and dissemination in those areas lucky enough to have them. More RSGs are currently being proposed and/or set up in other locations across the UK to help support, encourage and maintain Intensive Interaction for their members, and those they care for and support. Can you get involved?

'At home with Tom: maximising my son’s potential with Intensive Interaction' - interesting quotes from a chapter by Sara Moroza-James.

Sara Moroza-James' son Tom has diagnoses of autism and epilepsy. Following Tom's success with the approach, Sara trained as an Intensive Interaction coordinator. She also now runs the 'Intensive Interaction for parents’ Facebook group, and works part-time training people, mainly with other parents, in Intensive Interaction. 

Below are a series of quotes I have chosen from her chapter 'At home with Tom: maximising my son’s potential with Intensive Interaction' in the book Delivering Intensive Interaction Across Settings' (Barber & Firth, Eds, 2019) which is now available as a paperback book (£4.43 from Amazon).

'A full-time Intensive Interaction programme has allowed this once obsessive and lost little child to blossom into a happy, social, and connected thirteen-year-old who has an ever-expanding repertoire of activities and interests'.

'Not only do parents understand their children best but our children would surely choose us as the people they’d most like to do Intensive Interaction with'.

'On our darker days, parents may see no way out of circumstances as difficult as severe sleep deprivation, extremely high anxiety, severe mood swings, self-injury, aggression or incontinence, all of which affected Tom.  My solution was to train up others to do Intensive Interaction with Tom on the days when survival was my only goal'.

'It felt as though Tom and I existed alongside one another in two separate bubbles - closed off from the outside world, but also from one another'.

'Studies reveal a disconnection between what professionals think parents want from an intervention and what they actually look for: Professionals believe parents most value evidence-based approaches whereas, in reality, parents are most interested in the benefits that the approach will bring for their child'.

'Doing Intensive Interaction out and about – at the swimming pool or on the swing at the park – made connecting with Tom easier in the early days – and many autism-parents report similar successes'. 

'Informal home life does not lend itself easily to formal record-keeping but is essential when proof of progress is needed for funding or to encourage a school to take on Intensive Interaction'.

'Introduced the right way, Intensive Interaction can help parents have hope instead of despair'.

'Professionals should always be very careful when talking to parents not to use language in way that might be perceived as blaming the parents– reference to specific academic papers or theories should always be used with great care to avoid making parents feel part of the problem rather than part of the positive Intensive Interaction solution'.

'I am indebted to Intensive Interaction for the transformation in my son, for the wonderful changes in my own life and the happiness it has brought my family as a result. My dream now is that long-term high quality and a high quantity of Intensive Interaction, involving both professionals and parents becomes accessible to all individuals with autism'.   

Sara has also written her own book about using Intensive Interaction - 'Learning through Social Connection: How Intensive Interaction can help your child who has autism to learn more naturally'.

Read more from Sara's chapter in the book 'Delivering Intensive Interaction Across Settings: Practice, Community and Leadership' 

Kindle edition - £0.99 from Amazon 

Paperback edition - £4.43 from Amazon 

https://www.amazon.co.uk/dp/B07NRGFS3R/ref=sr_1_5?s=books&ie=UTF8&qid=1550225112&sr=1-5 

The strengths and limitations of the body of Intensive Interaction Research

I am currently updating our Intensive Interaction Research Summaries document for inclusion in an updated 'II Schools Curriculum Documents Pack' and this got me thinking about the strengths and the limitations of the current body of research that supports our claims for the outcomes of Intensive Interaction. Below I set out my general thoughts on these issues:

The strengths of the current body of Intensive Interaction research:

• The Intensive Interaction research is multi-disciplinary in nature i.e. it comes from a variety of professionals, with different participants and from different settings.

• Intensive Interaction studies have been based on the work of a range of experienced researchers supported by experienced professionals/practitioners.

• The Intensive Interaction research has been published across a wide range of well-established and academically well regarded journals (the majority peer reviewed), both in the fields of special education and in the more generic learning disability journals (and now one or two in Dementia journals as well).

• There has been a mixture of research methods used across the Intensive Interaction research i.e. both quantitative and qualitative methods (some within the same 'mixed methods' studies), which give a more contextualised representation of the approach and its outcomes.

• The Intensive Interaction research body consists of a mixture of experimental or quasi-experimental methodologies (e.g. ‘time-series multiple-baseline’ studies), comparative studies and individual case studies, using a range of well-structured assessment scales to help standardised measures e.g. PVCS.

• Different variables have been researched, including the beneficial outcomes of Intensive Interaction, reductions in negative/challenging or socially isolating behaviours, as well as some of the factors that influence the use of the approach across a number of different settings.

• Numerous case studies give rich data with good reliability using a range of data gathering methods and analysis (e.g. via non-participant/independent video momentary time sampling techniques), and the use of inter-rater assessment measures to help control or limit the potential for researcher bias.

• Generally positive findings of increased social or communicative progression emerge across the body of Intensive Interaction research.

• Intensive Interaction is based on well-founded and well-evidenced developmental theory, this giving the approach a clear theoretical coherency that enhances the plausibility of any positive findings.

The limitations of the current body of Intensive Interaction research:

• There are some issues associated with the standardisation or the ‘fidelity’ of the Intensive Interaction practices used within the research studies i.e. it is unclear if all the practitioners were doing the same kinds of Intensive Interaction.

• There could be some difficulties in replicating some studies (due to some methodological and/or procedural reporting issues) e.g. some studies do not make it clear of how the participants were sampled, and some had inadequate descriptions of the baseline phase.

• Some studies have potentially unidentified or unacknowledged variables which may impact on the validity of some of the findings.

• It is difficult to generalise from the findings of small cohort or individual studies due to the idiosyncratic nature of the participant group.

• Finally, there still isn't by any means enough research making its way into the published academic and research literature. If we want as many people as possible to benefit from Intensive Interaction, then we still need more published research into the processes and outcomes of the approach across all the groups of people with whom it might be used.

(For further reading on this issues see: Hutchinson, N. & Bodicoat, A. (2015) 'The Effectiveness of Intensive Interaction: A Systematic Literature Review', Journal of Applied Research in Intellectual Disabilities, 28 (6), 437-454.)

'Intensive Interaction in a Special School: The Leadership Challenge' - interesting quotes from a chapter by school Principal Ric Day.

Ric Day is the Principal of Woody Point Special School in Queensland, Australia. He has has been a leader in a variety of roles within special education for over a decade as a Principal, Deputy Principal and Head of Special Education Services. 

Below I set out a series of quotes from his chapter 'Intensive Interaction in a Special School: The Leadership Challenge' in the new book Delivering Intensive Interaction Across Settings: Practice, Community and Leadership (Barber & Firth, Eds, 2019).

'In all schools, and probably all organisations, we need strong relationships and high trust. Intensive Interaction ... asks us to be more vulnerable than many other teaching approaches. Therefore the strength of our relationships and levels of trust need to be higher'.

'We must carefully consider how we sell our ideas to our staff and communities. We must build a narrative to help our teachers connect their practice with making a difference for students.'

'While anecdotal evidence is often poor research it is usually a good motivator ... I’m not in any way trivialising the importance of quality research, data gathering and analysis and using evidence to make good decisions. That is very much the job of good educational leaders. My point is simply that research and data should act as the compass that guides us on our journey, but we should not rely upon it solely to be the wind that fills our sails.'

'Leadership is an exercise in moving a community forward by taking others with you'.

'I think it’s beneficial to have the involvement and commitment of staff at all levels of the organisation. Members of the leadership team, teachers, teachers’ aides and therapists should all be involved at some level. Everybody has something to contribute.'

'As leaders we must create the right culture, for cohesive teams to exist and to build purposeful peer interactions. We must make sure that we maintain high expectations, recognise contributions of team members, and create feedback rich environments'.

'Essentially, I believe that in order to mobilise a workforce you need to make people feel something. Thinking alone doesn’t cut it. Intensive Interaction comes with its own intrinsic reward, practitioners already feel something when they interact with students and generally my experience is that they want more'.

'In my experience a school that has a strong commitment to Intensive Interaction typically has a school culture that is student centred and deeply respectful toward all students'.

'The most wonderful thing about school culture and Intensive Interaction is their symbiotic relationship. While the school culture I have described above will contribute to the effective implementation of Intensive Interaction, the implementation of Intensive Interaction also most certainly contributes to a more positive school culture'.

'At the outset I stated that leadership is difficult, and it is. It requires us to be a great many things to a great many people. It requires us to be careful guardians of change, skilful users of data and esteemed researchers. However, I believe that above all else it is the empowerment of practitioners, the development of a positive school culture with high trust relationships and the creation of a collegial and collaborative community of practice that are the keys to successfully embedding Intensive Interaction across a whole school community'.

Read more from Ric's chapter in the book 'Delivering Intensive Interaction Across Settings' Kindle Edition - £0.99 from Amazon 

https://www.amazon.co.uk/dp/B07NRGFS3R/ref=sr_1_5?s=books&ie=UTF8&qid=1550225112&sr=1-5